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Celiac Documentary
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I am an independent public radio documentary producer and I am producing a documentary portraying the human face of Celiac Disease. The program, titled "Gut Reaction," will air on the national public radio documentary series "Soundprint" later this year.

What I need from you are your personal life stories (more details shortly). Please email me directly at rlpaulproductions@starpower.net

The program has two purposes. First, it will explain to that vast portion of the American public that has never heard or celiac what the disease is, how widespread it is, and that many of the people who are listening have the disease and do not know it or have the disease and have been diagnosed with something else. Second (and equally important), the program will tell its story -- of pain, discomfort, confusion, frustration, embarrassment, discovery, recovery and endurance -- in the voices of actual celiac sufferers. This approach will make the massage personal and take it out of the abstract realm which can be dismissed as something that is a problem of "other people."

I want to be very specific about what I'm looking for so please read this next part carefully.

I am looking for adults who learned they had celiac as adults -- people who suffered all their lives until they found out that they had celiac. I would like to hear from people who went to various doctors over the years and were given various diagnoses other than celiac, or were told "We just don't know what's wrong with you." I will want to ask you about your symptoms and the impact they have had on the way you have lived your life. So I need you to think hard about how comfortable you will be talking about embarrassing life experiences that were caused by your celiac and expressing your embarrassment and emotional pain, as well as your physical pain. I am looking for people who are good storytellers and who have an interesting story to tell. That's what will be most important in conveying the information that I will want to get out through this program.

This is a journalistic endeavor. Therefore no one will be paid to appear in this program, but you can imagine the good you will be doing by informing other people who are currently as in-the-dark as you were before you were diagnosed.

Please write me your story in the most engaging way you can, including as much detail as you think I need to know. Again, please send it to me directly at my email address - rlpaulproductions@starpower.net

If I select your story, I will need to contact you (please tell me a way to do that) and get you to a radio station to record your story. Unless you live near Washington, DC in which case I will ask you to come to my studio to tell your story.

For the last thing I'm going to write here, I ask the indulgence of the list manager. I do not mean this to be promotional.

For an example of the impact this storytelling approach can have, please listen to my documentary "We Were On Duty," about the survivors of the 9/11 attack on the Pentagon. You can hear it in the "Documentaries" section of my website -- http://www.rlpaulproductions.com/doc.html

Looking forward to hearing from you,

Richard Paul

rlpaulproductions, LLC

http://www.rlpaulproductions.com

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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